Monday, July 19, 2010

Thoughts and Test Results

Today we got the results back from Benjamin's stool sample that showed that he is pancreatic insufficient. This means that the thickened mucous caused by Cystic Fibrosis is blocking his pancreas from being able to release digestive enzymes needed to break down his food. We had already started giving him extra enzymes before each feeding these last two weeks, so this just confirmed what we already suspected. Still, somehow hearing the definitive answer just made my heart ache today.

I guess in some ways, maybe I've been a bit in denial about the disease, because my little guy just looks so healthy and perfect. To hear his test result just further confirms the reality of his situation, and while he is doing well, it just hurts to think of him being so dependent on these daily regimens to keep him healthy, and ultimately, alive.

One of my primary feelings after losing Eliana was disorientation. It was like our lives were headed down a certain path, and then all of a sudden the path dropped off into a black hole, only to come out again on an entirely different path.

I can't say that feeling has left me entirely, and maybe it never will. At times now, my grief over Eliana, and Benjamin's diagnosis seem intermingled. One has flowed so quickly into the other, and it is just a lot to experience in the span of a year. Knowing CF is a life-shortening disease, coupled with my all too recent first-hand knowledge of what it's like to lose a child is sometimes just too much. Even though modern treatments are significantly prolonging the lives of CF patients, knowing what it would be like without all the extra things available scares me. I really can't bare the thought of ever losing him, and can't allow my mind to go there.

After Eliana's death, so many things we were dealing with just seemed so surreal. Walking out of the hospital empty-handed, walking into a funeral home to make arrangements for our daughter, and so many other things. Now, I again have that feeling as I feed applesauce mixed with enzymes to my newborn before every feeding just so he can digest his food, and as I "thump" him on his back, sides, and chest twice a day, to loosen up mucous, and ultimately to keep him breathing. I just have to think of it on a day to day basis rather than the long-term, because the reality is, I am saving his life a little bit every day.

I think of the passage in 2 Cor. 10 that talks about taking every thought captive to make it obedient to Christ. I know thinking negatively about these things is not good for Benjamin or me, and isn't pleasing to the Lord. I have to constantly give these thoughts to Him, and ask Him to help me see it through His eyes. I'm sure this will always be a battle, but I know I can trust God to carry the burdens that I so often try to shoulder on my own.

One thing about CF is that I really don't know Benjamin's prognosis, because research is being done every day to improve the outlook, and it continues to look brighter every year for CF patients. They even think they are close to a cure, and until then they are coming up with drugs that are extremely effective in fighting off infections and keeping the lungs clear. With all of this in mind, there is no way to know what lies ahead for Benjamin, so I am going to pray and believe for the best.

Today, though, I am just weary in my frail humanity. Tired from a year+ of grieving, and not seeing an end in sight. I love this little boy as much as humanly possible, and really wished I could have spared him this disease. Still, I have to believe that God's plan is always best, and I pray we will be able to glorify Him in this. Our greatest prayer for Benjamin is for him to grow up to love and follow God, and to live his life to the fullest for Him.

I've been thinking a lot of Eliana today. Mark and I were noticing as Ben was sleeping how much he reminds us of her, his mouth, chin, cheeks, and today even his eyes when they were closed. Each of these babies a gift from God, so precious to Him and so dearly loved by us.
Lord, thank you for all of our precious children, hold them in your hands, bless them, and may your will be done in and through each of their lives.

Here's a sweet picture of Ben looking at Eliana's bear. It now belongs to him, a gift from his big sister in heaven.

We do not...grieve like the rest of men, who have no hope. We believe that Jesus died and rose again. 1 Thess. 4:13-14

Know therefore that the LORD your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commands. Deuteronomy 7:9


  1. You are simply amazing. As mommies, we do have to keep moving for our kids but you do it with such grace!

    He is so beautiful. He is so perfect so it is hard to realize everything that is going on in his body. I'm so sorry for yet another blow to your world ((HUGS))

  2. Ben looks so beautiful & healthy, it IS hard to imagine that he has CF. I know your heart does ache when you think about your little newborn having to take enzymes and have therapy to loosen the stuff in his lungs. I do know our Lord will carry you through this journey and I pray for a cure for CF very soon.

  3. My heart breaks for you Jess. I will keep hope with you and keep praying for you to be able to surrender those thoughts to the Lord. I haven't thought of that verse like this in a long time. Thank you for the reminder. It's so easy to forget that those thoughts are not pleasing to Him.


  4. Im so sorry!!!!!!!!!!!!! This is so not fair!! I will keep you guys in my prayers. He is beautiful!! I will pray he stays strong and healthy

  5. Je suis désolée pour cette nouvelle épreuve, j'espère qu'il va continuer de bien progresser, il est si beau !

  6. He is a beautiful little boy and he's been blessed with a wonderful family who loves and cares for him so much and would do anything for him! I hope and pray that advances continue with CF. I'm sure they have come a long way already. I can only imagine how difficult it is to have the grief intermingled. (((hugs)))

  7. I will be thinking of you and keeping Ben and your entire family in my prayers. Your faith is inspiring and it is clear that God chose YOU to be the mother to a very special little boy as he begins this journey. I am sure that it is exhausting at times, but I hope you continue to find strength from that little boy that you continue to save each day as I'm sure he also 'saves' you.